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Advice Please!

rlhorst22

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rlhorst22 Newbie
rlhorst22
Posted

Hello,

My name is Rachael and I'm 24 years old. I just found this site while I was doing research on Celiacs. I feel totally overwhelmed and I really could use some advice; this really does seem like to place to get some straightforward answers (not like at my doctor's office).

I've been wondering if I've had celiacs for about a year and a half now. I just finished my last year of college and I've spent quite a bit of that time in and out of the school's clinic. My symptoms really seem to point to Celiacs:

-I was told I had IBS when I was about 10 years old (and was told to live with it). I've been dealing with it for as long as I can remember and constant emergency trips to the bathroom are part of my daily routine.

-I had childhood epilepsy (which I read somewhere can be related to Celiacs).

-I am constantly exhausted (10-12 hours of sleep barely feels like enough, I can still take (and often do take) naps during the day as well.

-I had never heard the phrase "brain fog" until I started reading about Celiacs but that phrase perfectly describes how I feel when I'm trying to think/talk/study.

-I have low blood pressure (and the doctors don't know why) and I faint quite frequently when I stand up.

-Whenever I exercise my fingers get tingly (the pins and needles feeling).

Well I went to the clinic and told them that I suspect Celiacs and asked for the blood panel. My doctor spent a long time explaining how rare and unlikely the disease is, and handed me a pamphlet about IBS. He also told me that my IBS is most likely exasperated by depression, which runs in my family. (I wish I hadn't told him that because from that point on, I'm pretty sure that everything I said fell on deaf ears). He made an appointment with mental health and sent me home. I later insisted that he run the Celiac panel and he did, reluctantly. I'm pretty sure he did it only to appease me, and it came back negative (proving him right). I honestly have no idea which tests he ran or anything.

That was about 5 months ago and now I'm wondering if I have a false negative on my hands. My insurance starts October 1st and I plan to find a doctor to re-test. I guess what I'm asking is:

-Should I keep eating Gluten or should I stop in the meantime to see how I feel?

-What are the chances of that being a false negative and which tests should I ask for going into this appointment?

-Do my symptoms look about right to you guys? I'm wondering if I'm on the right track with this.

I'm just so fed up and frustrated with feeling this way. I am so mad at the doctors for insisting that it's depression and I'm terrified that it actually IS depression and in my neurotic search for a "real" cause I'm only spiraling further and further into craziness.

I would really appreciate any comments or advice that you guys might have. Thanks!

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cassP Contributor
cassP
Posted

what exactly was your test that was negative??

if you feel ok posting it here- lots of us can help you further.

false negatives are very common... and INCOMPLETE test orders are also very common.

both of my tests were part negative & part weak positive.. with only the EMA being positive. took me another 2 years and a genetics test to get me to finally go gluten-free 100%.

WheatChef Apprentice
WheatChef
Posted

First thing we need to get out of the way since it seems like you're interested in learning at least the basics of medicine and health:

THERE IS NO SUCH THING AS IBS DISEASE.

THERE IS NO SUCH THING AS IBS TEST.

THERE IS NO SUCH THING AS IBS CURE.

THERE IS NO SUCH THING AS IBS.

IBS is a what doctors say when they have no idea what's going on with you. It's actual definition is just a collection of symptoms for which there is no yet diagnosed cause. This means that any of the actual gut diseases/disorders are actually IBS until the doctor has run the correct test to determine what the real cause is. If you ever have a doctor give you a diagnosis of IBS, this means he's given up on getting to the actual cause of the symptoms and instead has just decided to charge you money for a diagnosis of "upset tummy".

Without knowing what tests the doctor performed it's impossible to tell you what your odds were of a false negative. Additionally it's impossible to tell you if he even ran any celiac tests at all considering he sounded like an absolute quack, depression is exacerbated and even caused by gut issues, not the other way around!

Since it does sound like you want a diagnosis, oct 1 isn't all that far away and once you get a good idea of when you can get tests scheduled you'll have a better idea of if you should wait to try any gluten-free diet. Basically if you're looking at getting tested anytime this year, don't go off the gluten yet. Going off of it will make the tests less accurate the more you're off. Once you go to your new doctor, if he starts talking about IBS go find a new one. I'd call him on it if I were you even, ask him why he's "diagnosing" you with symptoms and not a disease! Hell you already knew the symptoms before you came in there, you were the one who told him the symptoms, ask him if he'll be paying you for the "diagnosis".

starrytrekchic Apprentice
starrytrekchic
Posted

Hi, welcome to the board. Your doc may not have run a complete test (especially if he didn't know what to order) and false negatives on blood tests do happen.

You should keep eating gluten until testing. You have to be on gluten for the tests to be accurate. Afterward, you should try the gluten free diet regardless of the results.

Have your new doc order a full celiac panel. You also need to get your vitamin/mineral levels tested. (Iron anemia is very common in celiacs and would explain your fatigue.)

After the blood test, your doctor may want to schedule an endoscopy to see if your intestines are damaged.

If you can, call your old doctor and get a copy of the test you took five months ago. If you post it on the board, other people here can interpret it for you and tell you if he ran the correct test or not (and if he understood it.)

Edit: And get your thyroid tested, as it could be causing these symptoms also.

rlhorst22 Newbie
rlhorst22
Posted
  • Author

Thanks for the help!

I'll try to get in touch with the doctor and see what he tested. As a side-note to my little adventure, after graduating I moved to Germany. It makes it difficult to trick my doctors into giving me my medical history (they want me to come in and pick it up, fat chance of that). The good news is that German doctors don't see Celiacs as some sort of nonexistent quasi-illness and I have a legitimate chance of dealing with a competent doctor. I've already gone in once to see the German doctor and he said the same thing you guys did: IBS isn't a diagnosis, it's a symptom. So I'm feeling pretty good about him.

Also, I read somewhere that I should be eating a good deal of gluten in the time leading up to my tests. I already don't eat bread very often (I don't like it) but I know it's in a lot of other things that I eat. Do you think I should I be consciously upping my intake?

Thanks again and I'll try to get the info from my last doctor to post on here.

mushroom Proficient
mushroom
Posted

Your best chance for a positive test result is to go heavy on the gluten in the weeks leading up to the tests. Gluten light often gives (false) negatives. I would add bread (some good heavy German bread :) ) back in, painful though it may be, if doctor diagnosis is your goal.

cassP Contributor
cassP
Posted

Thanks for the help!

I'll try to get in touch with the doctor and see what he tested. As a side-note to my little adventure, after graduating I moved to Germany. It makes it difficult to trick my doctors into giving me my medical history (they want me to come in and pick it up, fat chance of that). The good news is that German doctors don't see Celiacs as some sort of nonexistent quasi-illness and I have a legitimate chance of dealing with a competent doctor. I've already gone in once to see the German doctor and he said the same thing you guys did: IBS isn't a diagnosis, it's a symptom. So I'm feeling pretty good about him.

Also, I read somewhere that I should be eating a good deal of gluten in the time leading up to my tests. I already don't eat bread very often (I don't like it) but I know it's in a lot of other things that I eat. Do you think I should I be consciously upping my intake?

Thanks again and I'll try to get the info from my last doctor to post on here.

omg! what's it like to "not like bread" ??????? whoa..

anyways- i called my PCP- and asked if i could get a copy of my celiac panel- i even asked what the charge would be... and she printed out 2 copies of both my tests and mailed them to me free. it was easy- they should be able to accomade u- especially if you're not in town.

yes- you should be consuming 4-8 slices a day for 2-3 months for a proper test.

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